I thought about having kids since I was a kid. I wanted lots. As I grew older, the wish for children was always there. Like the North Star, if not always visible, it was a point in the galaxy by which to chart my course.
Now I have two wonderful sons. Nate is in college, doing the great things that one does in college. He isn't sure what he will be when he graduates, but he has many options and talents. My older son, Dan, alternates his time living with his mother and me. He is happy right now, perhaps happier than he has been in years, having just started a new transition program. The program is helping him build a social network, get involved in the community, and gain some vocational experience. He has started to make new friends, and, through the program, has met a young woman he likes.
Since Dan was two, doctors have been labeling him. Whether it was called ADHD, LD, or NLD, Asperger's, anxiety, or OCD, cerebral palsy or epilepsy, I have learned that, in the disability game, there is no winner on the severity scale. All disorders can be helped through various interventions, and all of them can, and generally do, have an impact on the child and his family.
Finding His Way in the World
Part of living with a disability is the tension involved in finding one's place in a world that is unwelcoming. How to be "normal," given an individual's differences? To complicate things, there are a child's changing needs and abilities. Some things become easier for him, some harder. Some problems are outgrown or treated successfully, others grow more severe—or become tougher to accept—as the gap grows between the child's abilities and those of others around him.
The tension is made worse by the inability of doctors, therapists, evaluators, educators, and case managers to agree on a game plan. Condition X requires Y, but condition A requires B. This one says A, but that one says B. And if both X and A are present, others say that Z should be done.
Worst of all, the experts decide, one day, that our children have reached their potential. And if we don't accept this, we are in denial, they say. My son has lived through this, and I have, too.
What is Dan's potential? No one can know unless his mom and I keep trying to find out. Where can he function best—in a program or at home? Parents may be mortal, but programs and staff come and go, and are often not what they appear to be. How can he learn best? I wish I knew, but I know that giving up on learning will guarantee failure. Can he keep learning? Yes, absolutely. Whenever I doubt it, he surprises me by making a big leap forward. There is so much pressure—from experts—to accept the lowest level of possibility and the easiest solution.
And for the person with the disability, the question remains: "What is my future?" He and his family must answer this question at each stage of transition. We need a path, a sense of future, a sense of belonging and community. These are more important than any career, job, or set of skills.
Setting Limits Creates Limits
As parents, we must evolve. I am evolving, but as I do, I recognize that some of the intangibles are more important than those yardsticks that we use to measure success. I wish my sons success, independence, and, most of all, happiness. They will take different paths, but their measures of happiness will be the same: doing what they want to do, with people they care about, who care about them; doing something they value that is valued by others; giving, receiving, and having loving friends and family.
As I struggle with these problems, I struggle with my desire to promote Dan's growth without being unrealistic or creating false expectations. I always come back to the lesson he teaches me—that setting limits creates limits, and that unknown or unexpected possibilities mean that he will continue to grow.